Spina Bifida gets on my nerves!

I just need to vent for a minute.  Get some things off my chest. I know many of you will appreciate this post because Spina Bifida probably gets on your nerves too.  I just wish SB didn't affect EVERYTHING!  It would be nice if it just picked one thing to mess with and leave everything else alone.  I can handle the leg braces, the walker, and the wheelchair.  Caleb's physical limitations are the least of my concerns.  No big deal.  As far as I'm concerned if SB only affected mobility then it would be easy breezy.  As Caleb has gotten older the mobility issues just don't bother me like they used to.  I feel for all the parents out there with babies and really young kids, I know that their number one question is: "Will my child ever walk?"  Walking seems to be the thing we get stuck on and the thing that matters so much to us.  I know.  I've been there.  I used to wonder and stress over Caleb's lack of mobility.  But the truth is, I am SO happy with Caleb's progress.  I'm tickled that he is able to walk with his AFO's and walker.  I don't mind that he needs his wheelchair to go longer distances.  Will life be a little bit more difficult for him because he can't get around like everyone else?  Yes.  But it's manageable, and he will live independently, he will learn how to navigate and make it work.  I'm not too worried about that.

What I am noticing more and more as Caleb has gotten older is the neurological impact SB has.  We tend to focus on the physical aspect of things because that is what is most obvious.  We see the leg braces, the walker and the wheelchair.  We can't see the neurological issues just by looking at him.  But they are there...and they drive me CRAZY!  What is even more maddening is trying to decipher what is a neurological issue and what is just Caleb's quirks.  

Examples:

Routines:  Caleb is all about routine and doing things the same every time.  In the living room he wants his walker touching the center of the couch before he will get into it.  He wants Veggie Tales playing in the car when we back out of the driveway.  He has actually asked me to start our drive over because he forgot to ask for Veggie Tales before we backed out of the driveway ( I refused ).  He wants to "start over" if things aren't exactly right the first time.  He will erase something over and over and over until it is just right.  I finally cut the eraser off of his pencil because he couldn't get his homework done, he was spending all of his time erasing. It's seems a little OCD (but maybe we are all a little OCD).  

School:  Since starting Kindergarten I have seen some things. He has trouble focusing on his work at school, he doesn't always finish it.  I'm not sure if this is a neurological issue or if it is simply the fact that he is barely 5 years old and he has some maturing to do.  

Sometimes he has trouble writing the letter/number he says he is going to write.  He will say: "I'm going to write an 8" but he will write a 3 instead.  And he will immediately realize he wrote the wrong number.  It's like his hand and his brain aren't working together.

He is super sensitive to loud noises.  Now this is nothing new, and truthfully it has gotten MUCH better as he has gotten older.  I know this sensitivity is due to hydrocephalus, it's not anything that he can help.  He gets so anxious when he thinks he might be going somewhere that will be loud.  His class is taking a field trip soon to see a play and he is already very worried that is is going to be loud.  He is way to young to have such anxiety.

It's mind boggling the things that SB affects.  Caleb's brain is just different, it looks different, and it works different.  Not to say that he isn't intelligent, because he is very bright.  He is a super smart kid.  His brain is just different.  I see this more and more these days.  

He saw his neurosurgeon today and I requested a Neuropsycological evaluation for Caleb.  It looks like he will be having that done at the beginning of next year.  Here is what that testing will show us:

Neuropsychological testing is a procedure that measures and identifies cognitive impairment and functioning in individuals. It provides quantifiable data about the following aspects of cognition:


Short-term and long-term memory
Ability to learn new skills and solve problems
Attention, concentration, and distractibility
Logical and abstract reasoning functions
Ability to understand and express language
Visual-spatial organization Visual-motor coordination
Planning, synthesizing and organizing abilities

All of the areas tested are very common issues in kids with SB.  This test will really help us understand Caleb better and how his brain works.  This will also help us when it comes to his education and how he is functioning at school.  I'm really excited about getting this evaluation done.  I think it will give us invaluable information.

Here is something I discovered this weekend.  Caleb has been congested so I was giving him some OTC expectorant (guaifenesin).  Well yesterday he was acting super weird. He seemed kinda confused, a little slow, couldn't make decisions.  It was really freaking me out.  We were about ready to take him to the ER and then Glenn mentioned the medicine I was giving him.  So, I did a quick search on the internet and found several articles that said "guaifenesin" can affect the central nervous system, and it can have some neurological side effects!!  Since Caleb has neurological issues, it is likely that this simple OTC medicine was having a huge impact on his system.  I stopped the medicine and he was better within hours.  Just an FYI for you SB parents out there.  I don't give Caleb decongestants because I have seen them affect him but I never thought that expectorant would.  Now I know, and he will not get that medicine again!

There, I feel better now.  SB just gets on my nerves people!  And I just wrote about the neurological issues...don't get me started on the bladder and bowels!!  Good grief.

All this being said...I love that little booger to pieces.  He makes my heart smile and I can't imagine this world without him, not even for a second.

Fellow SB parents...What drives you crazy about SB?  Feel free to vent your frustrations!

Thanksgiving and Prayer request

 It has been a busy couple of days for our family.  Yesterday we ate with Glenn's side of the family.  Caleb and Benjamin got to see their cousin Andrew.  Benjamin and Andrew are very close in age so they had a lot of fun together.  It's like they say to each other: "Hey, you are my size!"

 I don't know what it is about Caleb's walker, but young kids LOVE it.  Benjamin has always liked Caleb's walker and he steals it from him several times a day.  Andrew also loved Caleb's walker and both boys went for a spin in it!  They were crashing into walls and banging people in the shins...it was great fun.

Cousin Andrew is a few months younger than Benjamin.  Caleb absolutely adores Andrew.  He is so sweet and so gentle with him.  It is terribly cute...now to get him to treat Benjamin the same way.

Today we went over to see my side of the family and eat with them.

 Caleb says the funniest things these days, he had Gammy and Grandpa Al laughing.

 Benjamin takes after his mom, he love bread!  I love how he is just looking at the dinner roll with adoration.

Caleb's favorite thing to do at Gammy and Grandpa Al's house is play Mario Kart on the Wii.  I think the child would sit in that recliner for hours and hours if we let him.  Caleb and I tried to play a 2 player game of Mario Kart but Benjamin kept spinning us around in the recliner where we couldn't see the T.V.  Little stinker, he thought it was so funny!

 

Even with all the coming and going the last couple of days, Caleb and I had time to sit at the table and play some games.  We played "Trouble" and "Chutes and Ladders".

"Chutes and Ladders" is one of those games that can truly go on until the end of time.  Just when I would think that one of us was going to make it to the winners circle...we would land on a slide and have to work our way up again!  Maddening!

He really liked "Trouble",  I think he just like pushing the dice popper!

We had a great Thanksgiving.  I hope all of you had a wonderful holiday as well.

On another note, I'm going to ask that all of you pray for one of our on-line buddies, Kingsley.  He had decompression surgery (fellow SB parents now what I am talking about) a couple of days ago.  This is a very big surgery with a significant recovery.  He is just a little guy, not even a year old yet.  Just pray that Kingsley has a very speedy recovery.  Pray for his entire family as well.

Brothers Wrestling

 Actually, I don't know if this is considered wrestling.  Benjamin was basically beating Caleb up...but in a fun way.  Caleb just lays down while Benjamin climbs all over him and smacks him.  I think Caleb likes the attention from his baby brother.

 "I'm going to get you big brother."

 "I've got you right where I want you big brother!"

 "Oh yeah, well I will just push you onto the floor little brother."

 "You forgot that I like to bite big brother!"

"Alright, I surrender to you little brother."

They had a lot of fun and it was really cute to watch.  I even got some video of the action.

Benjamin shows no mercy people.  If you are on Facebook with me then you know that Benjamin bit Caleb on the hand while I was in the checkout lane at Wally World.  And he loves to just rip Caleb's glasses right off his face.  The kid is something else!  Of course, Caleb is no angel, he can be a little rough with his baby brother too.  Never a dull moment in this house, let me tell you.  They keep me on my toes and they keep me smiling too!

Playdate with Ethan

Caleb got to see his buddy Ethan this morning.  I've been wanting to get the boys together for awhile now but it's hard to have playdates with Caleb in Kindergarten.  

 Ethan had a big surgery about 3 months ago on his left hip.  He spend about 9 weeks in a crazy cast that pretty much prevented him from moving at all.  The cast is off now but he still can't get up and walk around for a couple more weeks.  Ethan is a kid that is always on the move so I know these past couple of months have been really hard for him.  He is such a trooper though, make sure you check out his blog.

 Ethan LOVES Star Wars!  His mom used the word "obsessed".  He gave Caleb a quick lesson on how to use a light saber.  It was so cute.  Ethan takes his Star Wars very seriously.  The boy knows his stuff.

 Shooting darts with Star Wars guns.

Playing with a cash register.

We have known Ethan for a long time, our boys have had many a playdate over the years.  It is so fun to watch our boys grow.  It's fun to watch them actually play together and talk to each other.  The older they get, the more fun it is to watch.  We had a lot of fun over at Ethan's today.  It was nice to visit with his mom and watch our boys have fun together.

Family Camp 2010

This weekend was the annual Spina Bifida Association of North Texas Family Camp.  This was our 4th year to go and it is something that we look forward to every single year.  We had a fun-filled and absolutely exhausting weekend.  I took 207 pictures...don't worry I'm not going to post all of them.  But I am going to post a lot!  Enjoy!

There are always Smores over the camp fire the first night of camp.  Who doesn't love a Smore??

 Benjamin eating breakfast on Saturday morning.  

The camp has a huge dining hall where all the families meet for meals.  It is such a nice facility and mealtime is a great time to sit and talk with other families.  Benjamin consumed so much food this weekend!  I'm telling you that kid can EAT!!

 Caleb eating his breakfast.  

He sat next to this pretty little girl, Abby.  When we sat down at the table Abby saw Caleb in his chair and she said "Look, he has a wheelchair just like me."  How sweet is that?  That is one of the things I love most about camp, these kids are just kids here.  And this is one time where they get to be around a bunch of other kids just like them.

 After meals everyone would hang out in the Saddle room until it was time for the next activity.  The kids went absolutely bonkers in here!  They all had so much fun playing together.

 Caleb and his buddy Bryce.

 Enjoying some games outside.

 Kalyn and Caleb working on some crafts.

 Working very hard on decorating his slap bracelet.

Look how good his slap bracelet is?  I just told him how to spell "Family Camp" and he wrote it.  He's so smart.

Benjamin was something else this weekend.  He had so much fun but he was oh so tired.  He just didn't get near enough sleep...none of us did.  He loved being outside and playing in the leaves and dirt.

 I discovered that while Caleb likes to look at bugs....he doesn't necessarily want them on him.  And he doesn't want to touch them either (he takes after his mom).  And there are a lot of critters at camp.

 Benjamin just wandering off.  He found some dirt to play in, only it wasn't dirt, it was an ant bed!.  Thankfully it was an abandoned ant home, no ants lived there.

 There are deer all over the land.  Sometimes you can see half a dozen of them just running across the field.

 Abby and Caleb checking out a Daddy Long Leg spider.  Those were everywhere at camp, and the kids are fascinated by them.

 Caleb got to do a little fishing.  He didn't catch anything.

 One of the volunteers caught a nice big fish and Caleb was willing to touch it...it kinda looks like he is petting the fish.

Caleb and Nathan playing.

 While Caleb was participating in Sports and Games, Benjamin found this bat.  He pushed this bat all over the place.  You can see that I took several pictures of Benjamin with this bat.  He just had too much fun this weekend!

There is a big get together Saturday night. There are tons of games for the kids (and adults) to play, face painting, snow cones, and cotton candy.

 Caleb and Abby building with the blocks.

 Here is our lovely family picture.  Unfortunately Benjamin was super tired and he had just had enough fun.  He is not happy in this picture, no smile, just tears and snot.  Thanks to photo editing software, I can fix that....

...there, that's better!

The boys checking out a Praying Mantus that Bryce named "Jumper".  Too cute.

 Benjamin on the move!

 Caleb hanging out by our cabin as we loaded the car to head home.

Benjamin found a stick and some leaves to play in.

Caleb joining his little brother in the leaves.

It was such a fun weekend for our family.  We look forward to Family Camp every year.  The older Caleb has gotten, the more fun it is.  He was so excited about going this year and was constantly asking to see the calendar so he could count down the days to camp.  It is wonderful to spend time with so many families.  I've seen all these amazing kids grow in the last few years.  They are a part of our lives.  We are so grateful to have this opportunity.

And just for fun, here are some blog posts from previous years.

2007

2008

2009

A reminder of God's Grace

I just finished a really amazing book: "Wrestling with an Angel, A story of Love, Disability and the Lessons of Grace" by Greg Lucas.  It is a short book, only 100 pages, but it is powerful.  The author of a book is a father who has a son with some very significant needs.  I cried several times while reading the book.  It touched my heart.  I want to share some things from the book that really spoke to me.

I hear religious-minded people say all the time with good intentions, "God will never place a burden on you so heavy that you cannot carry it."

Really?

My experience is that God will place a burden on you so heavy that you cannot possibly carry it alone.  He will break your back and your will.  He will buckle your legs until you fall flat beneath the crushing weight of your load.  All the while He will walk beside you waiting for you to come to the point where you must depend on Him.

"My power is made perfect in your weakness," He says, as we strain under our burden.

Whatever the burden, it might indeed get worse, but I know this-God is faithful.  And while we change and get old, He does not.  When we get weaker, He remains strong.  And in our weakness and humility, He offers us true, lasting, and transforming, and undeserved grace.

It is this grace that enables us to do more than survive in this world.  Grace enables us to thrive in the presence of this world's sufferings while magnifying the One who breaks us with affliction-that He might equip us with comfort, compassion, and strength to give to others. (page 14-15)

I used to think that God would never give me more than I could handle.  I have learned in the last few years that this idea is not true, and it's not biblical.  Nowhere in God's word does it say that Christians will have never face suffering, or trials, or pain, or sickness or heartbreak.  I believe that God often gives us far more than we could ever handle on our own.  It is during those times of pain that God is there to help us, and to even carry us when needed.

While reading this book, I really reflected on the last few years.  I believe I have faced some of the toughest trials of my life specifically in the last 6 years.  Everything from Caleb having Spina Bifida to losing 2 precious babies in 2007 and Benjamin's emergency arrival leading to a hysterectomy.  I admit that I was angry at God during these trials.  After my second pregnancy loss, I didn't speak to God for days.  I was hurt and absolutely furious that He allowed such a thing to happen.  I felt like the rug had been completely pulled out from under me when I lost the first baby and right when I was beginning to pick myself back up, I was knocked down again by the second loss.  And to be honest, Spina Bifida absolutely beats me down some days.  So I have those days where I ask: Why? 

I know He loves me and cares for me, but sometimes I cannot understand this strange affection.  What kind of love is it that brings so much pain into my life-especially from a sovereign being who has the power to make all things right.  And so, by nature, I resist the One who ultimately has designed all these difficult conditions for my good and for His glory. (page 18)

Have I allowed these trials to bring glory to God?  I wonder if I have.

The book isn't just about having a child with special needs, it is about humility and discovering God's grace during our trials, and even in our everyday life.

Truth is, you never know when or where the breeze of God's blessing is going to blow.  Grace is like that-unexpected, undeserved, and unpredictable. (page 27)

Grace, even in the small things of life, is never small grace. (page 29)


I absolutely loved what he had to say about humility.

Truth is, we are often so self-centered that we fail to notice the most significant and God-glorifying aspects of what's taking place around us.  We miss out on a lot of human joy and deep inner satisfaction because we are so tied up with personal cares.  But Jake (author's son) can shift my focus away from my superficial concerns and force me to reflect on what is most important.  As I am caught up in the reality of his limitations, I am reminded of how small and secondary most of my personal concerns really are.
Throughout the Bible, though, God uses weakness to define strength, and He uses humility to display greatness.  Whether it is a stuttering goat herder who takes on an Egyptian Pharaoh and leads a nation to the Promised Land, or a small boy slaying a sword-wielding giant with a sling and a stone, weakness is God's tool to shame the strong.  And when the King of the universe became a man-even the servant of men, laying down His life for the very sinners that spit in His face-humility displayed greatness like the world had never seen. (pages 32-33)

I got serious goosebumps on that last sentence.

I know this is a long post and I wonder how many of you will actually read this all the way through but I had to share my thoughts.  This blog is like a journal to me and this book impacted me in ways I don't want to forget.  I needed to read this book right now.  I have really been struggling lately and this book helped me work through some things.  My mind has been consumed lately with things that don't really matter in the big scheme of things.  I have this need to control and fix things...but I just can't.  I needed to be reminded of God's grace and the strength that only He can provide me.  I need to be reminded that He is in control and He is so much bigger than any problem, issue, crisis, or trial that I am facing.  I just see a few pieces of the puzzle but God knows what the finished picture looks like.  I am so lacking on my own, it is God that gives me what I need for the day.  I just need to be reminded of that from time to time.  It's easy to get in a routine and just strive to get through the day and forget that God is eager and willing to help me.  All I have to do is ask.

"It is the LORD who goes before you.  He will be with you; He will not leave you or forsake you.  Do  not fear of be dismayed."
 Deuteronomy 31:8


"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
(2 Corinthians 1:3-4)

Ortho Clinic

Caleb saw the orthopedic surgeon this afternoon.  The staff had nothing but praise for Caleb.  They were all very pleased with his progress and how well he is walking.  It's always nice to get a good report.  I needed that today.

We ran into some of Caleb's best buddies while we were there.  And I finally got to meet Brittany and her daughter Brooklyn.

 How cute is this picture of Bryce, Nathan, and Caleb?  

 Bryce and Caleb

 Thankfully, they have Mario Kart in the waiting room.  This kept Caleb busy while we waited.  He loves Mario Kart!

Caleb has outgrown his AFO's so he was casted for some new ones today.

 

 

It will take about 3 weeks before we get his new braces.  He decided to have a baseball put on his braces this time, and they will have blue straps.  He is very excited about getting his new "baseball braces".